Journey with Noah: Juvenile Psychosis
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"It's the unknown we fear when we look upon death and darkness, nothing more". - J.K. Rowling
Summer break........Ahhh, a time that is filled with much anticipation for school aged children. I do not think it would be unfair to say that the prospect of not having to go to school over summer break was, at the very least - one of the most important topics that monopolized the minds of a lot of Noah's peers come the third week of June, earlier this year.
I imagine, a lot of children in Connecticut - and possibly throughout the country were ancy in their excitement armed with the knowledge that they would no longer have to wake up early each day to board the yellow bus and assemble into their school(s).
Unfortunately, the idea of being "Free" or on "Break" over the summer evoked a very different response from my son Noah, who turned 10 this past July.
For him, being on break did not mean that he would actually get a 'break' or that he would be 'free' from anything at all, whatsoever.
Instead, quite to the contrary - summer break for Noah meant that he would lose the valuable resources that had been made available to him during the year. Having recently transferred from a private to a public educational environment I believe that it was the anticipation of being on summer break, and the dread of not having a network of supports; that urged Noah to speak about his challenges, his sufferings.
Noah is plagued by the experiences of: VEOS (Very Early Onset Psychosis) and has been diagnosed with: Other specified Schizophrenia disorder or other Psychotic Disorder - marked by Persistent Auditory Hallucinations.
Noah works hard each day to overcome the monotony and insidiousness that has been classically defined as: Mental Illness.
Each day he bravely takes on the battle that is his darkness, his hallucinations. They are defined medically as: Auditory command hallucinations (of self-harm). Noah’s illness, his experience - is experienced by fewer than 0.04% children globally.
Noah's hallucinations manifest as a woman who nags, urges and encourages him to take his own life. She is relentless.......... My son, he is BRAVE!
With the goal being to secure resources for Noah, and for our family - I will not provide the space on this platform to share the shortcomings we have experienced in our efforts to help our son.
I believe the words of Virginia Senator Creigh Deeds, as highlighted in a 60 minutes segment which aired in 2012, are all that is needed to explain the barriers that parents with mentally ill children face in our country, and worldwide.
In essence: We are most often times fighting a system that was designed to fail, or to inadvertently at best - ignore; the very people that it was created to help.
"The system failed my son, tonight".
Va. Sen. Creigh Deeds, upon the tragic loss of his son to mental challenges
Very soon after Noah reported his experiences (i.e. Hallucinations) I began working feverishly to find anyone in the medical field equipped with the knowledge, experience and ability to evaluate, diagnose and treat Noah. In my opinion, that I hold to this day - Noah receiving adequate treatment is the determining factor that governs his longevity of life, his quality of life and his love for life, period.
After reporting his experiences to us and to the staff within his local public school I began to lose hours at work due to the demands that Noah's medical challenges placed upon our family, and the hours of work that are required by parents whose children face battles similar to Noah's, in order for their children to gain access to health care.
In October things continued to spiral in a downwards fashion. I became unemployed and not only we were limited in our ability to help our son from a medical standpoint - we were further constrained by the inability to provide for him, and for his younger sister.
The medical debt we had acquired in our attempts to get Noah care and to cover the reduction in earnings we had experienced as a result of the decline in hours that I was able to work (Avg. 10/Week loss) placed us in a financially dire position as a family. Our bills could not be paid come the end of the month in August and we began the month of September in debt, under water.
We remain in this position today, and it is only by the grace of God - our Creator, and because we have been blessed by some pretty phenomenal Rainbows, do I find the strength to boldly take on each new day. We love our children and we..... I - refuse to lose sight of the glimmering light that I see flickering in the distance at the end of our tunnel.
Often times we hear about the 'Stigma' of mental illness. And, prior to my own deep and personal exposure to mental disease my belief was that the 'Stigma' was a term that only applied to those in the community that lacked the education to understand the disease. People like me....... I was mistaken and gravely unaware of the weight associated with the "Stigma". I can say - from our experience that:
"Fear of a Name increases fear of the thing itself" - Albus Dumbledore
For these reasons, I have determined that Noah deserves to receive all of the support and encouragement that others are willing and able to provide him - and our family with.
And - that other children like Noah, suffering from a disease that manifests its illness inside of ones brain , equally deserve to have rainbows of encouragement as well.
Please - walk with Noah in his journey.
Monetary gain is secondary. Your compassion, empathy and words of good will are cherished and hold more value than Gold.
A portion of any/all proceeds will be donated to the following brave and fearless organizations. These folks are truly beacons of light and hope and are the rainbows for so many people who are living amongst the clouds.
Children's Hospital, Boston, Massachusetts
Manton Center for Orphan Disease Research
http://www.childrenshospital.org/research/centers-departmental-programs/manton-center-for-orphan-disease-research
Child Mind Institute
https://childmind.org/about-us/
Anna Freud National Centre for Children and Families
https://www.annafreud.org/
The Gus Deeds Memorial Fund
The Nature Camp History Project
http://www.naturecampfoundation.org/nature-camp/
Summer break........Ahhh, a time that is filled with much anticipation for school aged children. I do not think it would be unfair to say that the prospect of not having to go to school over summer break was, at the very least - one of the most important topics that monopolized the minds of a lot of Noah's peers come the third week of June, earlier this year.
I imagine, a lot of children in Connecticut - and possibly throughout the country were ancy in their excitement armed with the knowledge that they would no longer have to wake up early each day to board the yellow bus and assemble into their school(s).
Unfortunately, the idea of being "Free" or on "Break" over the summer evoked a very different response from my son Noah, who turned 10 this past July.
For him, being on break did not mean that he would actually get a 'break' or that he would be 'free' from anything at all, whatsoever.
Instead, quite to the contrary - summer break for Noah meant that he would lose the valuable resources that had been made available to him during the year. Having recently transferred from a private to a public educational environment I believe that it was the anticipation of being on summer break, and the dread of not having a network of supports; that urged Noah to speak about his challenges, his sufferings.
Noah is plagued by the experiences of: VEOS (Very Early Onset Psychosis) and has been diagnosed with: Other specified Schizophrenia disorder or other Psychotic Disorder - marked by Persistent Auditory Hallucinations.
Noah works hard each day to overcome the monotony and insidiousness that has been classically defined as: Mental Illness.
Each day he bravely takes on the battle that is his darkness, his hallucinations. They are defined medically as: Auditory command hallucinations (of self-harm). Noah’s illness, his experience - is experienced by fewer than 0.04% children globally.
Noah's hallucinations manifest as a woman who nags, urges and encourages him to take his own life. She is relentless.......... My son, he is BRAVE!
With the goal being to secure resources for Noah, and for our family - I will not provide the space on this platform to share the shortcomings we have experienced in our efforts to help our son.
I believe the words of Virginia Senator Creigh Deeds, as highlighted in a 60 minutes segment which aired in 2012, are all that is needed to explain the barriers that parents with mentally ill children face in our country, and worldwide.
In essence: We are most often times fighting a system that was designed to fail, or to inadvertently at best - ignore; the very people that it was created to help.
"The system failed my son, tonight".
Va. Sen. Creigh Deeds, upon the tragic loss of his son to mental challenges
Very soon after Noah reported his experiences (i.e. Hallucinations) I began working feverishly to find anyone in the medical field equipped with the knowledge, experience and ability to evaluate, diagnose and treat Noah. In my opinion, that I hold to this day - Noah receiving adequate treatment is the determining factor that governs his longevity of life, his quality of life and his love for life, period.
After reporting his experiences to us and to the staff within his local public school I began to lose hours at work due to the demands that Noah's medical challenges placed upon our family, and the hours of work that are required by parents whose children face battles similar to Noah's, in order for their children to gain access to health care.
In October things continued to spiral in a downwards fashion. I became unemployed and not only we were limited in our ability to help our son from a medical standpoint - we were further constrained by the inability to provide for him, and for his younger sister.
The medical debt we had acquired in our attempts to get Noah care and to cover the reduction in earnings we had experienced as a result of the decline in hours that I was able to work (Avg. 10/Week loss) placed us in a financially dire position as a family. Our bills could not be paid come the end of the month in August and we began the month of September in debt, under water.
We remain in this position today, and it is only by the grace of God - our Creator, and because we have been blessed by some pretty phenomenal Rainbows, do I find the strength to boldly take on each new day. We love our children and we..... I - refuse to lose sight of the glimmering light that I see flickering in the distance at the end of our tunnel.
Often times we hear about the 'Stigma' of mental illness. And, prior to my own deep and personal exposure to mental disease my belief was that the 'Stigma' was a term that only applied to those in the community that lacked the education to understand the disease. People like me....... I was mistaken and gravely unaware of the weight associated with the "Stigma". I can say - from our experience that:
"Fear of a Name increases fear of the thing itself" - Albus Dumbledore
For these reasons, I have determined that Noah deserves to receive all of the support and encouragement that others are willing and able to provide him - and our family with.
And - that other children like Noah, suffering from a disease that manifests its illness inside of ones brain , equally deserve to have rainbows of encouragement as well.
Please - walk with Noah in his journey.
Monetary gain is secondary. Your compassion, empathy and words of good will are cherished and hold more value than Gold.
A portion of any/all proceeds will be donated to the following brave and fearless organizations. These folks are truly beacons of light and hope and are the rainbows for so many people who are living amongst the clouds.
Children's Hospital, Boston, Massachusetts
Manton Center for Orphan Disease Research
http://www.childrenshospital.org/research/centers-departmental-programs/manton-center-for-orphan-disease-research
Child Mind Institute
https://childmind.org/about-us/
Anna Freud National Centre for Children and Families
https://www.annafreud.org/
The Gus Deeds Memorial Fund
The Nature Camp History Project
http://www.naturecampfoundation.org/nature-camp/
Organizer
Jessica Bence
Organizer
Ledyard Center, CT